Many people with epilepsy and family members are not aware of when and how to seek specialty care, and if they are, they may still face numerous barriers to accessing the care they need (e.g. insurance limitations, geographic and transportation barriers, etc.). Delays in obtaining appropriate diagnosis and treatment can lead to increased seizure frequency and severity, seizure-related injuries, mood and memory disorders, higher healthcare costs, unemployment, and increased risk for premature death.
“My neurologist keeps prescribing me medication or dosages that don't work. My father is on three different kinds of anti seizure medication and continues to have seizures. I'm on two and continue to have them.”
Accessing Epilepsy Healthcare in Michigan
According to guidelines from the National Association of Epilepsy Centers, and recommendations based on the International League Against Epilepsy's definition of drug-resistant epilepsy, individuals with epilepsy who still do not have full seizure control after trying or seeing a general neurologist for should seek specialty care with an epileptologist at a comprehensive epilepsy center.
"My daughter is dead because no doctor ever mentioned the word SUDEP"
2017 Treatment and Care Survey:
Barriers to Epilepsy Healthcare in Michigan
While diagnosis and treatment at a full-service epilepsy center are shown to improve seizure control, fewer than 1% of people with drug-resistant epilepsy are referred. When referral does occur, it happens an average of over 20 years after onset of habitual seizures.
According to a recent survey of epilepsy patients in Michigan...
Only 32% of those without full seizure control were seeing an epileptologist.
Patients reported having lived an average of 7.4 years without full seizure control while never being referred to epilepsy specialty care.
References: 1 Engel J Jr. What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture. Neurology. 2016 Dec 6;87(23):2483-2489.
*Based on the Epilepsy Foundation of Michigan's 2017 Treatment and Care Survey. If you would like more information about results please contact Russ Derry at [email protected] or by calling 1-800-377-6226 ext. 1302.